Hyper PARAThyroid Disease-Alert the media!

It`s difficult to be believed by anyone here in Norway... not really difficult, but more unknown.

I have had doctors who collected a fee for telling me there was nothing wrong when I was in fact suffering from the always increasing, debilitating effects of this disease. There's no excuse for this to happen any more.

Parathyroid disease can present itself slightly differently in different individuals. Parathyroid disease is diagnosed through blood values of calcium, parathyroid hormone and vitamin D. Some people will show an obvious elevation of calcium while others will show a modest elevation of calcium but an obvious elevation of the parathyroid hormone and a suppression of vit D, which is considered a hormone. When it comes to symptoms, some people will not report any while others will report feeling very fatigued, have significant sleeping problems, feel nauseated and may have osteopenia or osteoporosis and also have sore muscles and bones along with this. Treatment of parathyroid means having the affected gland or glands removed which stops the over production of parathyroid hormone. Once the overproduction of the hormone is stopped, sleep problems, depression, GI problems and bone problems resolve.

the criteria for diagnosing HPTH has to be updated and implemented worldwide...it is not looked for in the face of obvious screaming indicators and symptoms like low vit d3 levels along with normo-high calcium and moderate to high iPTH.., osteoporosis, and various symptoms, most often put off and dismissed and treated with antiinflammatories and antidepressants... just one of the easy to read groups of tests not understood or even worse performed, and if so, ignored and/or interpreted incorrectly by virtue of the current state of recognized Standard of Care information that is referenced to by docs and used by the hmo's.. Please change this mistake, it is tantamount to malpractice

I have had surgery to remove 1 tumor and I am still having problems.

I've had this disease for 8 years only diagnosed last year, awaiting surgery, very I'll with it

My daughter had this horrible disease, diagnosed when she was pregnant putting her life and the life of her baby at risk. She was only 35.

disgusting misdiagnosed disease that my family suffers , strips you of your quality of life sometimes for many years ,,,, it shouldnt be like that in this day and age of modern medicine

I suffered with the horrendous effects of hypercalciuma for over 6 years until they agreed it WAS caused by hyperparathyroidism and operated, I had given on on drs and figured it was all in my head until I got pregnant. Met the best docter who understood the condition and cured me . With surgury.

been suffering from this for years, glad I ran across all this information so I can find a dr who will listen to me and not think I am nuts in the head. Still looking for this dr, but at least I have an idea what is wrong with me.

I suffered for many years with chronic fatigue and chronic headaches. Three different doctors ignored my symptoms and basically told me nothing was wrong. After my calcium went well over 11,my PCP FINALLY took notice. It had been over 6 years since my calcium had been elevated. I contacted a renowned parathyroid surgeon and had not one, but two adenomas removed. One was nearly golf ball size and probably had been there for 10-12 years! There is no excuse for the ignorance doctors have for this disease!

Hyperparathyroid disease, if left untreated with surgery, will cause serious problems of the bones and nervous system. Significant osteoporosis will occur and having this disease can cause a person to feel very tired, depressed and can impair their ability to concentrate and process information and emotions. Hyperparathryoid disease is treated through surgery where a surgeon will remove the abnormal gland ( of which their are usually 4) Removing the affected gland will restore the correct level of calcium and parathyroid hormone in the blood and stop the damaging affects of the overactive and overgrown gland.

Please educate the doctors and stop making those with parathyroid disease suffer through the "wait and see" approach. Waiting causes more damage and shortens the life of the patient. Many of us have been to a multitude of doctors who just dismiss the problem.

I suffered from this disease for nearly 20 years before I finally had the surgery to correct this at Walter Reed National Military Medical Center. I was appalled at the general level of ignorance about this disease, and what I found to be an attitude of sexism and ageism that kept me from getting the treatment that I needed for so long. My personal, professional, and academic life was profoundly affected by primary hyperparathyroidism as opposed to aging, menopause, and arthritis, which were offered as reasons for my state of ill-being. I am in my sixties, and since my surgery, my "arthritis" is gone, I am clear-headed, have been training, and I am becoming an athlete. Menopause is a phase of life, not a disease, and I have a resting heart rate of an athlete. I am enjoying the good health I wish I could have had with more timely surgical intervention.

I have been diagnosed and been suffering emensly from primary hyperparathyroid disease symptoms for over a decade as Canadian surgeon doesn't recommend surgery stating the disease is mild ( Lack of updated knowledge + pt surgical experience ) In Canada the symptoms are not considered unless signs of organ damage. I have not been able to work for yrs due to suffering with the multi symptoms and my life has gone from living one to not living a kife but only existing.

Everyone, Everywhere needs to know about Hyperparathroidism. This illness is NOT rare as some believe. It is simply unrecognized and under diagnosed because Doctors don't know much about it and patients have never even heard of it. Patients are often sent from doctor to doctor and indure test after expensive test for YEARS. Many of us are even misdiagnosed and treated for serious illnesses such as Rheumatoid Arthritis or Dementia, to name a few. This is very sad since HPT is easily diagnosed through common blood tests and treatable with a simple outpatient surgery. This illness has been in the shadows too long. Everyone needs to know this illness exists and doctors need to devote more understanding to proper testing and diagnosis of this common illness. Please help us shine a light on awareness for Hyper PARAthyroidism.

After suffering for 16 yrs with numerous symptoms, seeing multiple physicians and specialists, I started doing my own research online. Thankfully I came across some information on Hyperparathyroidism. I was convinced that this, along with Polycystic Ovary Syndrome, was the cause of all my medical issues and I was RIGHT. I finally found an Endocrinologist, Dr. Timothy Bailey in San Diego, CA, that was knowledgable enough to properly diagnose and treat me. After having surgery to remove an adenoma and the offending parathyroid gland, I now can say that the majority of my previous symptoms have subsided (I still have PCOS so not everything will go away). Physicians need to be better educated on this disease as well as the public. The under and misdiagnosed need not continue to suffer!

please add hypopara to this

Being this sick and not getting properly diagnosed has impacts far beyond the physical. It destroys careers, relationships, and confidence in one's own abilities. It doesn't have to be this way. Please help spread the word.

The psychological issues are the worst.